Advanced HER2+ disease in the era of adjuvant Herceptin

Debbie L. · 06-08-2014, 03:19 PM

I'm not sure I can clearly explain my question. Maybe Lani can help with both question and answer?

I suspect that there is a big difference in outcome for those who recurred after primary treatment that did not include Herceptin (or any anti-HER2 agent) and those who got Herceptin adjuvantly. Specifically, I wonder if any of the longterm NED survivors of stage IV HER2+ disease (the ones who might well be cured) includes any of those who recurred after receiving adjuvant Herceptin?

Does anyone know of any studies or discussions that have looked at this?

Let me know if my question is not making sense to you and I'll try to clarify.

Debbie L.

SoCalGal · 06-09-2014, 12:54 AM

Hi DL,
thought of you the other day - participated in an online discussion with some docs at stanford who are working on a non-estrogen device to help w/vag atrophy.

Anyhow - re your question, I recurred after non herceptin first line at original dx. I did not qualify at the time - herceptin was only approved for a larger tumor, or node positive or both or worse. I was early stage, small tumor and node negative BUT HER2+! I have always felt that if I had been able to get herceptin when first diagnosed that I would not have recurred.

Pamelamary · 06-09-2014, 01:19 AM

Dear SoCalGal,
I love you! So many many ways to say that this fancer cucks!
Many wood gishes..... Pam

Lauriesh · 06-09-2014, 03:22 AM

I did a year of herceptin in 2005 and was diagnosed with liver mets in 2010. Have been Ned for almost 3 1/2 years.

Laurie

Joan M · 06-09-2014, 07:43 AM

Great questions, Deb!

I did Herceptin off label in 2004 after being diagnosed in fall 2003 at stage II with 7+ nodes. I didn't try to enroll in the Herceptin adjuvant clinical trial because of the positive nodes and not wanting to pull the straw without the Hercpetin.

I asked my oncologist to give me Herceptin off label after I had AC. It was administered with T. I recurred to the lung in January 2007. Yet, Herceptin is the only drug I've been on since then, despite another lung recurrence in the same area of the lung (wedge resection to remove first recurrence and RFA to ablate the second one) and a brain met (craniotomy followed by IMRT).

So, it's hard to tell in my case because of the local procedures. No evidence-based medicine there.

Laurie, I never realized that you had an RFA of the liver in Feb. 2011. When I did it in 2008, it was considered "blasphemous." Like, how dare I do such a procedure! Talk about getting crap on a crap stick (to quote Brenda again) from all the medical oncologists!
Ditto for the wedge resection.

But I had an oncologist who understood. She also has a doctorate in microbiology, so perhaps she's cut from a different cloth. But even she said about the RFA, "I wouldn't do that if I were you." Needless to say, I did it anyway, and my current oncologist said that he can tell from that, how I don't get an A+ for obeying. I love them both!

Lauriesh · 06-09-2014, 05:42 PM

Joan,
I actually scheduled a consult without even telling my onc, as I didn't think he would be in favor of it.
I had it done at the univ of minn and they said they would only do it if I had no other mets. I also belong to bc.org and It is definitly becoming more common, as I see quite a few more women having it done.
Laurie